Detection of Childhood Visual Impairment in At-Risk Groups Heleen Evenhuis*, Gabrielle van der Graaf*, Margreet Walinga*, Karen Bindels-de Heus † , Maria van Genderen ‡ , Marleen Verhoeff ‡ , Kathleen Lantau § , Helen van der Meulen-Ennema ¶ , Nelleke Meester**, Lien Wienen**, and Nicoline Schalij-Delfos †† *Intellectual Disability Medicine, Department of General Practice, † Department of General Pediatrics, Erasmus University Medical Center Rotterdam, Rotterdam; ‡ Bartiméus-Sonneheerdt, Zeist; § TOV Foundation, Amsterdam; ¶ Amant, Amersfoort; **GGD Zuid Holland West, Zoetermeer; and †† Leiden University Medical Center, Department of Ophthalmology, Leiden, the Netherlands Abstract Children with intellectual disabilities have an increased risk of visual impairment, caused by both ocular and cerebral abnormalities, but this risk has not been quantified. The same applies to preterm children and children with cerebral palsy with a normal intelligence. Many cases probably go unidentified, because participation of these children in preschool vision screening programs is not guaranteed, or because no screening program is available. Although there may be a case for specific screening, there is insufficient scientific evidence supporting such a claim. A “safety net” construction for vision screening is proposed by a Dutch expert working party, based on scientific information and joint professional expertise, to improve identification of both ocular and cerebral visual impairment in at-risk groups. Costs and gains of the model should be scientifically evaluated in a test region. Keywords: intellectual disabilities, vision, visual impairment, screening Before deciding on a population screening, investments and gains are to be weighed against each other. Costs are usually high, so the yield—on a population level—should be accordingly high and should be supported by scientific evaluation. The “disease” should occur frequently enough and be enough of a burden. Detection at an early stage should be feasible with methods that are easily applicable in a nonhospital setting. Effective treatment should be available to and accepted by the population concerned (Wilson & Jungner, 1968). Some 10 years ago, after an extensive review of the literature, investigators of the University of Oxford concluded that there was insufficient scientific evidence of the benefit of general preschool vision screening (Snowdon & Stewart-Brown, 1997). The authors advised against the start of new screening programs until more evidence of their benefits would be demonstrated. At the Vision 2005 congress in London (UK), one of the workshops was specifically dedicated to childhood visual impair- ment (Jones, Rubin, & Hamlin, 2006). During the discussions, it was generally agreed that even in high-income countries, prob- ably only a tip of the iceberg of visual impairment is detected in at-risk groups, for instance in children with intellectual disabili- ties (ID). It appeared that in many countries no regular vision screening programs exist. Therefore, in the summer of 2006, as a preparation for an update of the Dutch consensus on detection and diagnosis of visual impairment in persons with ID (Nagtzaam & Evenhuis, 1999), we specifically addressed detection of visual impairment in children. A literature search was con- ducted, followed by discussions in a working party of Dutch experts in the fields of intellectual disability medicine, general pediatrics, youth health care, orthoptics, and pediatric ophthal- mology. Our aims were to: (1) identify obstacles to early identi- fication in at-risk groups, among them children with ID; (2) judge whether there is a case for screening; and (3) recommend a model to improve detection. CONSIDERATIONS Obstacles to Early Identification In the Netherlands, a public child healthcare vision screening program for children aged 0–19 years has been in use for many years (Velzen-Mol, 2002). However, the combined experience of the working party was that many young children with ID, who are treated and checked by pediatricians, do not visit the regular maternal and child healthcare centers. The result is that they do not participate in preschool vision screening offered by these Received January 9, 2007; accepted May 11, 2007 Correspondence: Professor Heleen M. Evenhuis, MD PhD, Erasmus Univer- sity Medical Center, Intellectual Disability Medicine, Department of General Practice, P.O. Box 2040, 3000 CA Rotterdam, the Netherlands. Tel: +31 10 408 80 11; Fax: +31 10 463 21 27; E-mail: h.evenhuis@erasmusmc.nl This article is an abridged version of children with intellectual disabilities and cerebral visual impairment: Problems with detection and diagnosis, a chapter in Visual Impairment in Children Due to Damage of the Brain, by G.N. Dutton and M. Bax (Eds.) (in press). Journal of Policy and Practice in Intellectual Disabilities Volume 4 Number 3 pp 165–169 September 2007 © 2007 International Association for the Scientific Study of Intellectual Disabilities and Blackwell Publishing, Inc.